We met with the hospital today, and they updated us on all the changes that are in process due to Liberty’s stay with them.

1. The kitchen is in process of revamping the foods they order and how they order it, so they can provide a full menu to patients who have dairy allergies, nut allergies, gluten allergies, or food dye allergies (as well as possibly other common allergens of which I am unaware)

2.  The I.T. Department has it on their to-do list to reprogram the computer data system during their next scheduled system update, so that when red dye is entered as an allergen, it will automatically send an alert to both the kitchen AND the pharmacy instead of only to the kitchen as it has in the past.

3. The pharmacy has been re-educating their pharmacists on what to do when a red dye alert comes through.  They already have a double-checking system in place, but the pharmacists were not following it.  Thus, inaccurate medications were being sent to patients.  That has been addressed and is continuing to be addressed.

4. All nurses and care providers are being re-educated on the importance of double-checking all medications sent up from Pharmacy before offering it to their patients, and a system is being put in place on each floor to mark medicines better for ease of checking.

5. The need for having dye-free liquid medications on hand - particularly the most common meds like Tylenol, Ibuprofen, Oxycodone and Benadryl - has been expressed to the correct people who can make that happen, and the idea of this hospital going completely dye-free for ALL medications has been sent up the chain.  We have been told the “higher ups” are taking our complaints seriously, and this is something that is now in process.  It sounds like it is a long process.  However, the new information that Liberty’s situation brought to light has shown that this is a serious medical need for many people, and they are treating it as such.

We are to be kept updated monthly as the process continues.  Please keep praying for all of these changes to take place and to be finalized for future patients.

I have had another parent contact me regarding serious troubles her children have faced with the hospital not carrying dye-free medications, and that story has been passed on to our contacts at the hospital.  If the need arises in the future, we can all have a conversation together with hospital leaders, but it sounds like right now Liberty’s situation alone was serious enough to get their attention.  The second story came in handy today to illustrate that this has been an on-going problem there, not just a “supply chain problem” as was suggested today.

Hooray for God and for all the children who come after who will benefit from this!  Liberty has been praying for this since the beginning, and she is encouraged to hear this latest news!  We all are. 😊

A friend asked for an update on the hospital meeting, and I found out that this post I had written this past Tuesday had never been fully posted to the blog.  Oops.

So here is the intended post.

Thank you all for praying about the meeting we were supposed to have with the hospital regarding medication troubles.  It was scheduled for Monday, December 20th, at 10:00 a.m., but no one showed up for the virtual meeting.  When we contacted the main person who had set the meeting up with us, she stated that it was her fault.  She had never communicated to the rest of the attendees that the meeting had been set.

A new meeting has now been set for December 28th.

A friend asked me today what specifically the meeting is about.  I have not written about the severe troubles Liberty had with medication in the hospital because it was too big for me to handle emotionally while we were in the hospital dealing with everything else, but now that we are home and Liberty is safe there is nothing for me to handle, and writing about it is just passing information on, no emotions attached.  Hooray for me!!!  I am praying that this information may help save someone else who may find themselves in a similar situation as my daughter was in.

Liberty has severe neurological and physical reactions to red dye.  I intend to explain that in better detail in a future post because this information could save another child’s life in the future, but right now I don’t want to take the time to go into it all.  Her adverse reaction was listed before the surgery, but after surgery she was given red dye in medications repeatedly, and it did major damage.

We addressed the issue and thought it was resolved, but it wasn’t, and we consequently discovered that the hospital was unable to take care of Liberty because they did not have multiple medications she needed without red dye.  We are meeting with the hospital to discuss these issues and to encourage them to consider going dye free for the sake of their future  patients.

I know this description sounds mild and like it’s not really a big deal, but when I write what actually happened, you will understand why it truly is a big deal for ALL hospitals and all patients.  So please pray fervently along with us for this change to be made starting at this hospital.

Our new meeting is scheduled Tuesday, December 28th.

Monday, December 20th, we celebrated our Thanksgiving Day!  We thawed the big turkey and invited friends over for supper (complete with stuffing just for Liberty), and in honor of giving thanks, we read through Liberty's Thankful Chain that we brought home with us from the hospital.

We had a great time reminiscing because each link returned a different memory of the people and conversations that had occurred in our room while that link was being written.  The chain is mostly in order, but sometimes people added to both ends, so we found out the timeline of when that particular chain happened in our lives is out of order.

I am thankful for Liberty because she has shown me that no matter the circumstances we find ourselves in, there is always a reason to smile, love others, and be faithful to our Savior Yeshua!! Thank you, Liberty, for being a spiritual warrior for God and encouraging me through your journey.  Ashley, Mommy's friend

Liberty had her first physical therapy session today.  The lady assessed her physical weakness and set up an action plan to get her back to functioning and breathing.  She also told us they have a person on staff who has completed training as a specialist in lymphatic system therapy.  What the what?! 😃

How cool is God!

I haven't written lately for two reasons.  One, there doesn't seem to be a whole lot of time in my normal day to write, and two, I've been very discouraged.  

Mercy and VeeVee came home with colds, and we have had to keep them away from Liberty which hurt their hearts and hurt our hearts, too.  Liberty is still in pain and struggling to do normal daily activities.  She begged to spectate at the choir concert Sunday afternoon that she was supposed to have been singing in, but just sitting through the concert was too much for her.  She had to leave halfway through.  That night she asked me if she would ever get back to being able to live regular life again, and I was so discouraged I couldn't really answer her.

Little things are throwing me for a loop.  I can't find several items since our month away, and I found myself yesterday morning wanting to throw a fit like a little child over it.  The intensity of my reaction to this annoyance surprised me, and even after recognizing my own ridiculousness, I still couldn't shake the overwhelming desire to throw a fit.  At first I counter-acted this feeling by speaking praise out loud to God.  But the praise was weak and half-hearted.  So then I asked God for help, and I played some praise songs that never fail to help me out.  I was able to sing them with my whole heart, a reiteration of God's goodness and my choice to trust and follow Him always, but even that didn't calm the storm inside my soul.

Last night, I got to chat on the phone with Jeremy's dad, and he helped cheer me with a pep talk full of determination and reminders that healing takes patience.  He did help me feel better, but still the internal ickiness lingered.

This morning I asked God to prompt people to pray for me.  At this point, I couldn't even pinpoint what exactly my trouble was.  A general feeling of tiredness, gloominess, sadness.  Gray sky syndrome, maybe.  What if I could just get some time totally to myself?  Would that help out?  I feel like I just can't go anymore.  Then all day today, I've been receiving texts and messages from friends "just checking on me."  Thank You, God.  I knew He was asking them to pray.  But still, I felt the same.

Tonight, I met with some friends who prayed for me, and later Jeremy and I hung out with some more friends.  In the process of catching them up on the past month, I realized the trouble.  A spirit of despondency had taken over me.  I've posted here before about the BIG PRAYERS that God gave Liberty and me in the very beginning, and I have been feeling discouraged because there is one final piece that has been addressed, but it has not yet been changed at the hospital.  I've been feeling like that one thing was an impossibility, and maybe we would need to resort to more drastic measures ourselves that I dread going through.  But tonight, as Jeremy and I recounted all the bad of the past month and then all the goodness of God in the land of the LIVING, that despondency fell away!  

While ticking off on my fingers the changes God has already set in motion out of all those BIG PRAYERS, I received once again assurance that GOD is not done doing BIG THINGS.  He intended it from the very beginning, and He is not going to walk away from an incomplete job.  He is still using us, and just like healing takes patience, sometimes waiting on God to finish what He starts takes patience.  

"He who began a good work in you will carry it on to completion in the day of Christ Jesus!"

Patience is quite possibly my hardest character trait.  Well, maybe my second hardest.  But it is right up there, let me tell you!  But now I can wait again with patience and eagerness for God's finished answer to be handed out for the good of all future kids!

Jeremy and I have another meeting with the hospital on Monday.  Please pray for God's work to be accomplished, and my desire is that God won't ask us to go through more drastic measures, that He will just do it completely on His own.  Will you please pray with us?

Everybody all together in the same place at the same time!!!  :-D

I assumed being home would reset everything back to “normal,” but I’m learning that isn’t the case.  However, we *are* acclimating to our new routine, and I’m feeling more comfortable in my own skin again.

Last night I dreamed we were back in the hospital.  I had fallen asleep on my little plastic couch off to the side of Liberty’s room, and the privacy curtain was pulled around the couch, separating my little corner from the rest of the room.  In my dream I woke hearing many voices talking quickly together, and under the curtain I could see many pairs of feet surrounding Liberty’s bed.  They were in the process of taking Liberty to a distant place permanently, and it seemed to be urgent.  I tried and tried to push the curtain back so I could see and understand what was happening and why, and where were they taking her.  But the curtain kept tangling around my arms and legs.  I couldn’t get past it, and while I wrestled with the curtain and yelled at them to stop, they took Liberty from the room and I was left in silence, still fighting the curtain with all my might.

I woke up in panic in my own bedroom.  It was about 2 a.m.  It was just a dream, I told myself, but I couldn’t shake that feeling of dread.  I wondered if Liberty was also having nightmares in her room, and I began praying earnestly for peaceful dreams for her.  I asked her today how she slept, and she told me she had been in the middle of a nightmare, a repeated nightmare from Monday night, when suddenly the atmosphere shifted to lighthearted comedy instead of dread and fear.  She said she wondered at the time how it suddenly changed in her dream, and now she thinks God might have miraculously changed it for her from my prayers.  Yay for God!

I had set my alarm for earlier in the morning today with the intention of getting good rest and popping out of bed full of energy, but that did not work out.  After my nightmare, I couldn’t fall back to sleep, so I just lay there thinking of everything.  When my alarm went off Wednesday morning, I was exhausted.  

I had also planned to get many things unpacked and put away around the house, but I couldn’t seem to focus on anything either yesterday or today, until finally this afternoon, something suddenly clicked in my head, and I began efficiently doing all the things.  Hooray!  I was beginning to worry about myself, but I think maybe my brain just needed time to decompress or something.  

I’m supposed to get up early enough to go walking with my friend tomorrow morning, and I’m really hoping I’m capable of doing that.

We are also figuring out Liberty’s rest needs.  I’ve noticed every day Liberty has the most energy and focus right after breakfast, so if there is anything big that she wants to accomplish, she’d better get it done in that 30 minute window of time.  After that her energy steadily decreases until around 2:30 p.m. when her ability suddenly drops completely, and she needs to lie down in bed.  Getting the child to actually go to bed is another story altogether, though.

Today, some friends dropped by for a quick visit around 4:30ish, and Liberty had rested long enough that she was able to walk out to the living room on her own with strength and have an enthusiastic conversation.  Have I mentioned she LOVES to talk?

She stayed up and active the rest of the evening, and even played Phase 10 with me, Daddy, Grandma, and Grandpa.  She wasn’t the best at strategizing or paying close attention, but she had fun and didn’t need to quit partway through, and she only claims to ache “a little” at bedtime.  She ached enough that she wanted me to check her for swelling, though, and her tenderness level is untouchable all through her left side just now at bedtime.  I’ve learned that the awful achiness is also normal for her right now while she is still healing, so I did not feel too alarmed at all that.

Victory and Mercy will return home on Friday!!! 🎉😃🙌🏼  I am so very much yearning to be reunited with all my girls again!  But I am valuing the wisdom of my husband who realized in advance that Liberty and I would need some time at home alone to learn what her needs truly are before adding her sisters back into the mix. Together, we are learning and adjusting and enjoying a quiet life for now.   

We are home!  We arrived home around 9:30 last night, and we’ve enjoyed our first full day without monitors beeping, and nurses nursing.  It has been wonderful, and at the same time a little stressful.  Now, we have to rely on our judgement alone on what is too much for her.  What time to do anything.  Whether she needs pain meds or not, etc.  

She got up from sitting on the couch mid-morning, took three steps, and dropped suddenly to her knees.  Hard.  

“Huh, that’s funny.  My legs won’t work,” she puzzled.

While I was still digesting this turn of events, she got herself back up, attempted another step, and fell right back down again.  She quickly struggled to her knees, preparing to stand again.

“No!  Stop!” I waved both hands at her as I ran over.  “Stay down there.”

Together we assessed the possible causes, and eventually I helped her slowly to her feet and back to the couch.  

She’s so unpredictable.  She’ll be full of energetic conversation and laughter one minute, and dropping off to sleep the next minute in the middle of a word.  Parenting and nursing this situation is difficult, so pray for extra wisdom for us.

She is not fully healed.  They have dried up her lymphatic system which runs on fats, so she has to continue her 10 grams of fat per day diet for the next few weeks while it continues to build stronger scabs and scars.  Then we can slowly reintroduce fats and see if the scars hold and that she doesn’t spring a leak again.

She has lost 17 pounds so far, and every day she loses more.  I can count her ribs.  I have to keep telling myself this is temporary and necessary and ultimately for her good, just to get MYSELF through this.  She’s being a really good sport about starving all the time, and her self-control is phenomenal.  Definitely way better than mine.  She points out that the alternative is going back to a chest tube.  I guess I’ve just never had the proper motivation for my own self-control! 😜

After we know her vessels are holding, then we need to work on strengthening her lungs, which have taken a big hit in all this.  They are showing significant signs of deterioration from lack of vigorous use.  She currently does deep breathing exercises throughout the day, and she is doing as much body movement exercise as she can tolerate.  But as I’ve already described, we never know for sure what she can tolerate until she suddenly cannot tolerate it.

But.

We are home!  And not currently leaking that we know of!  Two more links in my own Merry Chain.